2

A good day

I actually had a good day today, although I’m paying for meeting up with relatives for 4 hours – very exhausted and seizey now!

Once we got home my bf called the company conducting my assessment for PIP, and the woman on the phone was just lovely and so helpful.

Firstly we asked if there was a way to move my assessment from the city 50 minutes away (where they gave us the appt) to the city 15 minutes away. Being out the house for longer triggers an increase in seizures; being on transport for any amount of time triggers an increase in seizures…so I couldn’t do that.

Anyway, they moved my assessment across really easily…which begs the question of why they were sending us further away in the first place?!

Next we had to ask about allowances in the assessment room. This would either be a room with no windows and dimmed lighting or a room with covered windows and dimmed lighting – failing that, a desk I can sit under andhide hide from the light 😂

The woman put that on file and their appointments team should be calling us in the next few days to talk about what they can do.

Finally we needed to ask about recording the assessment. The fact I have seizures means my memory is hugely affected, and I can’t remember things like I used to. An assessment is stressful, and not remembering what was said would be terrifying for me…however PIP sent us a booklet of rules, and one was that if you want to record the assessment you have to let them know in advance and use a recording device that provides two hard copies (CD or cassette) BY THE END OF THE ASSESSMENT.

So. We don’t have anything that could do this, and we can’t afford to buy a recording device. The woman’s going to ask if we can use a phone to record, and if not then my bf will be writing everything said by hand…meaning the assessment will last twice as long, but what can we do? 😅

Exhausted. Yawn.

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4

I despise my parents

Parents should be the people you can rely on most in life to support you…I’m reaching breaking point with my parents yet again 😑

They’re completely unsupportive, which we already knew, but the worst is when I’m telling them something difficult (that I’ve had a lot of seizures, or that I feel extremely sad, that I can’t cope with how poor my quality of life is)…they don’t respond, they don’t care. I called yesterday afternoon and was almost in tears, because sometimes I’m just so overwhelmed by how limited my life is, so lovely…and they were not responding to things I said and YAWNING down the phone at me!

When I hung up, after an incredibly upsetting, frustrating phonecall, they didn’t bother to get in touch or ask how I was at all…my partner stupidly thought they might text and check in, I knew they wouldn’t.

No matter how many times I try explain what my life is like or how awful my seizures are, they can’t grasp it at all, there’s never a hint of understanding or sympathy. Anytime I talk about being disabled I’m met with silence, whistling, or a change of subject. It’s absolutely disgusting.

On some level I know they either care, or want to appear to others (family) as if they care (this charade is *hugely* important to them)…but I can’t do it anymore. I’m tired of having to parent them, of listening to their issues and sympathising with them, whilst I get nothing in return. I’m struggling to live with 12-25 seizures a day, mourning the loss of my independence & any semblance of a life…I just can’t do it.

I tried to ring my dad today to ask about a recording device. I got my PIP letter through (whole other story which I’ll try post about) and the only way they let you record the consultation (which I need otherwise I’ll remember none of it) is if the device creates two hard copies of the recording by the end of the assessment – cassette or CD.

I wanted to ask my dad if he had anything he could lend or any ideas what we could use; he let the phone ring then hung up, twice, and hasn’t attempted to get in touch since 🙄

I put up with an abusive childhood and forgave them. I put up with them mocking my self-harm as a young teen, and forgave them. I put up with them screaming at me when I disclosed my mental health condition, and forgave them. I put up with their entire lack of support or interest when I started having seizures, and forgave them.

But I’m gonna have to have a break, at least for a little while. Putting up with their shit is so bad for my mental health.

If I sound like a whiny dick, I’m sorry. I’ve just put up with too much shit for so long, and sometimes it’s way, way too much.

2

Preparing for my appt

Guys I am SO SCARED about this appt!!!!

I’m not even totally sure why. The day’s gonna be a big day out, which will make me sicker so that won’t be nice…but I’m just so stressed that I’m gonna get fobbed off and not taken seriously again. I just want to get to the bottom of these seizures and to get a diagnosis. I don’t care if I have epilepsy or PNES, I just want to *know* so I can hopefully get treatment that works and we can have a better life…

I don’t want them to diagnose me with epilepsy if they’re non-epileptic seizures, because that means taking strong, pointless medication. But I don’t want them to immediately jump to a diagnosis of PNES based purely on my diagnosis of bipolar, because then my brain could be damaged by so many seizures or they could progress to tonic clonic if untreated. I basically want to be taken seriously and given the right diagnosis!!

I’m so scared about this appt XD

We went to my bf’s parents last night and my new welder’s goggles did really well with the various lights. I had an awful cluster partway through the night, which could have been because a light was flashing down the back/side of the goggles…but I was able to recover from that within about half an hour and enjoy the rest of the night again, slowly returning to normal 🙂

My partner filmed some of it for the neurologist appt too!

0

Oh ffs

Thanks to the inordinate amount of stress I’m dealing with atm, it was always gonna trigger a depressive episode.

But it still really, really, REALLY sucks that it’s happened.

This is the last thing I needed right now 😞

I’m tired of my life being so, so limited. 

I’m tired of having dozens of seizures every day and living with all the after effects. Of living in fear. Of being unable to do anything for myself. Of having so little support from the NHS. Of benefits HEAPING stress onto my already difficult life. Of family & friends being totally oblivious to how awful everything is. Of my parents lacking all caring. 

I’m sick of everything…

I’m already scared of how this depressive episode is gonna go.. I hope it’s ended before Christmas 😭

1

A tough day

Stress and seizure rage today 😩

Phoned PIP today to tell them about my seizures (we were waiting until a medical professional had acknowledged they were seizures, but that’s obviously going to take too long)…figured if they won’t acknowledge them as seizures because I’m not diagnosed, they’ll at least see how damaging they are to my quality of life. I was already only one point off the enhanced rate of PIP, so I guess with seizures they’ll have to qualify me.

My partner also called a company about a disabled bus pass. It seems I’ll qualify new, but the easiest way is to wait for PIP’s reassessment, and then use that as evidence. Bloody hell.

Anyway. I got some nice photos (of me and a burnt down house) once everything had stopped being so screwed by seizures.

Sad confused seizey me trying to take a video

Collected re-grouped me, that’s better!

I went off in a rage for an hour. Don’t remember much, cut my finger somehow, then phoned my partner and we talked, eventually meeting up. I hate how abusive I am around seizures with seizure rage, I fucking hate myself for it 😫

Took some nice photography when we were back together though.

2

A&E, nice staff & negligence

I’ve been having an awful time for seizures.

Ever since autumn hit, and the days are mostly grey and the sun sets earlier, I’ve been having 10+ seizures MORE a day than I usually do.

Saturday was awful. Mid afternoon I was out of it for over an hour, with back to back seizures and being unable to respond or understand anything between them. I was having seizures regularly all day.

At about 8pm we called 111, making it clear they were NOT tonic clonic seizures and I was not in non-convulsive status epilepticus right now. We said we were just concerned abs didn’t know what’s to go four help. The guy said he wanted to call an ambulance to bring me in, and when we said we could get the train there so as not to waste their time, he said he wanted us to travel in am ambulance.

We arrived at A&E at 9.30pm. The paramedics were lovely – asking us about our pets and really putting me at ease. They turned the lights off in the ambulance and put the blue lights on so add to be nicer on my brain. I had four seizures on the way to the hospital.

We waited about four hours at A&E then were seen by a Doctor. He did some examinations, then turned the light off in the cubicle so he could do exams where I’d need to remove my goggles. He did this himself and I didn’t ask him to do so.

He did a pupil reflex test where he shone a light in my eyes, which immediately triggered a seizure. He timed the seizure (45 seconds) and asked my partner if how I was behaving was typical – staring, unresponsive, picking at things.

When I came round he said the light was clearly a trigger, and that these were obviously absence seizures. We told him how I feel before, during, and after, and he said it was all very typical of seizures.

It was so nice to be listened to and understood!

He wanted me seen by a neurologist, but there was no way to do that right now, so he said he’d admit me to a ward and I’d spend the night there.

We were waiting in that room about three hours. Within the first hour I had a blood test, ECG, gave urine, and had blood pressure & temp taken for the 4th time. 

At about 4am we were moved into the hallway. Here the fluorescent lights were extremely bright, and I’d already had 45+ seizures that day so my brain was mush. I began to feel very out of it,  had seizures, felt awful and was panicky. I got a really bad headache and my partner got me some paracetamol. The hospital was full of noisy drunk people which was not being my head. I remember tearfully begging staff to put me somewhere dark.

Just before 5am I was moved to the ward. A consultant Dr came and did reflex tests – no lights, just tapping my joints, getting me to squeeze his fingers etc – he asked for an overview of why I was there and looked at my notes. He commented that a temp reading said I’d had a fever earlier, which was ‘weird’ but ‘probably nothing to worry about’, although he wanted to do a chest xray the next day.

At 5.25am I was left to go to sleep, although it took a long time. I was next to the brightly lit hallway which didn’t help, and the nurses walked about singing, shouting to each other and patients etc.

At 7.15am a male nurse said “turning the lights on ladies”, and fluorescent light flooded the room. I’d slept with my face under a jacket, so I emerged and grabbed my wide brimmed hat and goggles. Almost immediately I started having seizures – the lighting was an obvious trigger, along with only getting one hours sleep, stress, the heavy seizure day the day before, and I hadn’t eaten in 20 hours.

I spent the next 45ish minutes out of it, seizing, and feeling terrible physically – trembling, exhausted, nauseous. I deliberately wanted to ask for help from one of the nurses walking past, but wasn’t aware enough and couldn’t manage words. I finally tearfully stammered to one “the lights are really getting to me”. He turned the light directly above me off.

At another point the nurse who had been assigned to me for the day said “welcome back” as I came around from a seizure. Otherwise I was ignored.

At 9am a Dr and someone else came to see me. He asked how I was, and all I could think to respond was “okay…”. He asked where I lived, and it took me about 10 seconds to work it out and reply. He asked what I did for a living, and I couldn’t work out what to say so said I receive PIP. He then said something truly disgusting: “You’re too young for PIP, no? You should be out and about in the world”.

I was unfortunately too ill to respond and tell him that disability has no age limit. And don’t you think I would truly love to be able to get out in the world, rather than living a life of misery?

He finished with “you want to go home today, yes?”, and I confusedly said yes. Because I did, after I’d Breen seen by a neurologist and gotten help. He then said I was released to go.

The nurse assigned to me came and asked if I had someone who could come pick me up. I was still confused, but said my partner. I called my partner and didn’t know what to say other than come to me haha.

I sat there for a while, not understanding at all what was going on, then gathered my things and tried to find someone to ask if I could leave and wait outside. I just wanted out. I stood in the hallway for several minutes, but was too out of it to understand how to catch anyone’s eye and ask, and everyone just walked past me. I had a seizure, then walked further up the corridor and finally said to a passing woman “excuse me, if I’m being discharged can I go wait outside?” She checked with a nurse and said yes.

I left the ward and walked down a few corridors before having to stop, very confused, and have a seizure. Once I’d come around I started walking, stumbled across an exit sign, and left.

I called my partner to let him know where I was heading, then called my parents. They were furious about how I’d been treated, and my mum insisted on calling the hospital. Staff were happy to speak to her about confidential information to do with me without asking for my consent.

My mum was told several HUGE lies.

  1. That I’d had a CT scan, and the results showed I wasn’t having seizures. This didn’t happen. I never had a CT scan. I didn’t have ANY examinations that could identify seizures. When my mum called back to confirm this, she was told it was a ‘mistake’ and that they can’t be expected to know details of 43 patients at once!
  2. They said that no staff had witnessed seizures in 12 hours of observation, and the reason I was released from the ward was because I hadn’t had seizures that morning. I was able to tell my mum I’d been having many seizures since 7.15am, and one staff member actually referred to them by saying “welcome back”. There were also the paramedics, two A&E nurses, and the A&E Dr who had witnessed seizures.

My mum was furious.

She’s filing a formal complaint for us, so we can rest and recover from the experience. I’m still having a ton of seizures and feel awful everyday, and medical professionals are still refusing to help. 

And I’ve learnt to never go to A&E for my seizures again!!!